Thursday, June 17, 2010

Lunch Box Chronicles: Special Post about an Exceptional Child!

We love connecting with our Spelt Right customers.  And, yesterday, I heard from Linda, an on-line customer from NJ,  that her family is ready to place another "stock up" order until they make another trek north to Maine.   Several members in Linda's family have Lyme's disease and they have to be very careful about their diets as foods can either help or severely aggravate their symptoms.   Spelt is one of those special foods that this incredible family can eat.  Myles, their 10 year old, entered the MBL Jackie Robinson Breaking Barriers Essay Contest this year.  As a 4th grader, he won second place in a context with more than 9,000 applicants nationwide.  He wrote about the barriers he faces with Lyme's disease.

With the permission of his mother, I am reprinting his essay here.  I had my children read it.  It is moving and inspiring.  If your kids are like mine and complain about such things as not having enough t.v. time, have them read Myle's essay.  He has the perspective of one much older than his years. I've also linked one of the many articles that was written about Myles and his essay.  Enjoy and be inspired!

MY FIGHT WITH LYME DISEASE
By Myles Hutcherson
4th Grade
Mrs. Corrynn Ross
West Freehold Elementary School
Freehold, NJ 07728


"My name is Myles Hutcherson and I am a ten year-old boy from Freehold, NJ.  I have faced many barriers in my short life just like Jackie Robinson.  The biggest barrier I have faced though is having Lyme Disease.  Lyme is a disease you get from being bit by a tick.  When my family lived in Massachusetts, I got Lyme.  My mom and brother have it too but I think I have it the worst of everyone.  Lyme affects your whole body and everyone reacts differently.  For me, Lyme has been really tough. It makes me really tired and weak.  Sometimes, I can barely even get out of bed.  It also, makes you ache all over.  My knees and arms always hurt.  Most of all for me, Lyme means I am restricted from eating certain foods.  If I eat regular sugar, flour, or other processed foods, I get really sick.  My body will break out in a rash, I have difficulty breathing and all of my symptoms get way worse.  This is really hard because when I am at school or at holidays and they have parties or celebrations I have to watch everyone else eat sweets, while all I can eat are the foods my parents make for me that don't make me sick.  I have been on a strict diet since I was four years old which is when I was diagnosed with Lyme.  My family has been really supportive of me.  My mom makes special foods for me so I can enjoy the parties like the other kids.  My dad is a really good cook and he learned to make all of our favorite foods with ingredients that I can eat so we can continue to enjoy all the great recipes the family likes.  Again, we will not let Lyme ruin our lives.  We will continue to persist, never give up and always keep a positive outlook.  Now that I know I have Lyme, I have to take lots of medicine everyday and every night.  It took a long time for doctors to know what was wrong with me.  Most doctors don't believe that Lyme Disease is even real or if they do, they think it is no big deal.  Because of this, they usually don't believe you when you say you are really sick. Sometimes my friends don't believe me either.  They think because you look healthy and don't have to be in the hospital that you aren't really sick.  Trust me, I am.  My mom works really hard to keep me healthy so she joined the board of the Lyme Disease Association.  Now she does lots of research to get a better understanding of what causes Lyme and how best to treat it.  I am really thankful for my family because they have kept me going through a really tough struggle.

My favorite sports are baseball and basketball.  I always work really hard to get better and try to participate as much as I can.  Unfortunately, it is really tough with Lyme because you get really tired and sick and sometimes I just can't go on.  Even though it is hard, I don't let it get me down.  I fight through the pain and sickness.  I won't ever let Lyme beat me.  During my baseball and basketball seasons, I have to take more breaks than the other kids.  Sometimes, I can't get to practice or the games because I am too sick.  Even though my teammates sometimes don't understand and think I am weak, I don't get mad at them because they just don't understand.  I keep a positive attitude and still try to endure the pain to help my teams win.  Our AAU basketball team is really good and I am committed to helping my team get to AAU Nationals.  Even if we never make it, being a good teammate, a good friend, and the best player I can be is motivation enough for me to keep working no matter what Lyme does to me.

In school, I have tried to take responsibility for helping others understand Lyme and what it can do to you.  I have talked to my teachers, classmates, and friends about Lyme Disease and what you have to do to avoid it.  Also, I have talked to everyone about good nutrition and what you should eat to keep your body healthy.  Since I have had to eat really healthy since I was a young boy, I now know a lot about foods, nutritional values and how to stay healthy.  I have tried to pass that on to everyone I know so they too can be as healthy and fit as possible.  I can tell you for sure, if you have Lyme and you don't eat well, you will definitely get worse.  Trust me, I know.

Recently, I was diagnosed with another tick borne illness called Babesiosis.  It is another infection you get from the tick bite.  I didn't know I had it until recently.  This infection makes parasites in your body that eat all the nutrients you have.  The thing about Babesiosis is it makes everything worse.  Any symptoms you have will be twice as bad if you have this infection.  When I found out that I had Babesiosis I was so sad.  I thought to myself, "not another thing!" I couldn't believe it.  More medicine, more doctor visits, more blood tests.  Ughh!  After a few days though, I decided that this was just another challenge I had to face.  I wiped my eyes and decided at that point, this would not beat me.  I would continue to work hard, do great in school, educate everyone I could about Lyme and good nutrition and keep being a happy kid.  Even though I can't do all the things other kids can do, I have learned to accept all the things that are good in my life.  I know I have to make sacrifices that will keep me healthy.  While I used to get upset and down, I now stay positive and just feel thankful that I have such a great family, friends and teammates.

My life and challenges are similar to Jackie Robinson. Even though he had to endure racism, we are similar because we both wanted to do something we loved and there was something in our way trying to stop us.  Just like Jackie, I am not giving up.  He had to deal with people making fun of him, telling him he couldn't be successful and trying to keep him down.  Despite this, he kept a positive attitude, remained determined to be the best he could be, and never lost sight of his goals.  I use Jackie as a role model whenever I start to wonder if I can make it.  If he could, then I can too. 

Jackie also inspires me because I am a biracial boy who loves baseball and basketball.  I know that Jackie is the reason I can play sports.  His sacrifices and accomplishments have allowed me to be an athlete.  It motivates me to continue to work as hard as I can to achieve all of my goals.  I follow his example of being a great teammate, maintaining his commitment, remaining determined to achieve his goals, and showing courage to fight through whatever life put in front of him. 

My dad teaches me to live by the word P.R.I.D.E.  This word means, Positive mental attitude, Respect, Intelligent choices, Determination and Enthusiasm.  I use this as a reminder that "if you can see it, you can be it".  I bet Jackie did the same thing.

My name is Myles Hutcherson and I am a ten-year-old boy from Freehold, NJ.  Remember my name and remember my story.  I will never give up on my dreams and goals and I won't let Lyme Disease beat me." 

Below is an article in the June 3, 2010 of the Examiner in NJ
Article about Myles Hutcherson

1 comment:

  1. 3 Years later, here I am. I am still battling the disease, but now I am feeling so much better. Just decided to say hey.
    Myles Hutcherson

    ReplyDelete